I Should Also Tell You...

April 06, 2011

...that we got Noah's evaluation results on Monday.

We didn't get them in time for his IEP meeting, but no matter, the school district team agreed that he belongs in the smaller special education kindergarten program for most academic portions of the day, with a few hours in the (gigantic, one teacher and 28+ kids, oh my God) general education classroom, albeit with "support" and regular pullouts for one-on-one occupational therapy for fine-motor delays.

All in all, a very good outcome, with no need for us to halt proceedings with our last-minute evidence and change of diagnosis and THIS WHOLE IEP MEETING IS OUT OF ORDER dramatics.

But yeah. We do have a change of diagnosis. ADHD, or at least several assessment scores that put him at the top of the "very high likelihood" range. Also a word retrieval disorder, and confirmation of a bunch of ongoing sensory-based delays that we already knew about, so like, whatever. Pffft. Bring it. And yet: GAH, OMFG, ETC.

You guys, I am so tired. I am beat. I read the reports, I shrugged my shoulders, I went upstairs and lay down. I told the ceiling fan that hey, we could really, really use some good and happy and easy around here, and soon.

***

I told Noah about PopPop last week, probably no more than five hours after I knew. He took the news so nonchalantly I might as well have told him "Noah, I'm really sorry, but...we're out of butter."

And then, a few minutes passed, and he revisited the topic after some thought: "You lost your Daddy!"

"Yes, I did. And it makes me very sad."

"I'd be sad if I lost my Daddy."

"I know you would. But Daddy is fine."

"Can I have a banana?"

"Sure."

And then, after a few more minutes, he coughed.

"I coughed but I'm not going to die."

"No! No you are not. Don't worry, PopPop was a very different kind of sick. The kind we couldn't give him medicine for, or the kind the doctors couldn't make better, and when you're sick we can..."

"Look, this is Harry Potter and he has a wand. See? See his wand, Mommy?"

"Yep. I do. It's awesome."

***

Later, out of the blue, Ezra asked "Where's PopPop?"

He asked that a lot last week, never quite satisfied with our answers, because PopPop wasn't in his chair or in his bed, and where else could he be? Why are we visiting Nana's house without seeing PopPop too? What the hell, you guys?

"PopPop is gone, Ez."

"In da car?"

"No, not in his car. He's...well..."

At this point, every time, Noah would get exasperated with our pussyfooting around the obvious, correct answer.

"HE DIED," he'd say. "HE'S DEAD."

***

One night -- oh, I forget when, exactly, every night has been a blur of grief and/or pregnancy-related ailments, honestly -- I had a headache and was sprawled out on the couch, bleating to the boys to please keep the noise down.

Noah came over and snuggled next to me.

"I'm sorry your head hurts, Mommy."

"Thanks, dude."

"But you're not going to die."

"No, I am not."

"And Daddy isn't going to die. And Ezra isn't going to die. And none of my friends are going to die. None kids are going to die. Or mommies or daddies or brothers ever."

Comments

*sigh* Gosh, so much to say, but words fail me. I'm swimming in such similar hard (both my parents died suddenly, a month apart, last summer; my son just diagnosed ADHD ETC, doing the CSE/IEP; my partner's mom has stage IV lung cancer), so it's hard to read your post, but always weirdly comforting to be reminded the universe doesn't/didn't/wouldn't single me--or you--out. Let's just keep trucking.

You guys are handling this so well with the boys! My mom died long before my daughter was born and I find that if I'm matter of fact about it and use the word died, that it doesn't have the stigma and fear that I worry it will. I know that's different than your very-recent-death situation, but I can think of a dozen examples from my childhood where my parents being matter of fact about something bad took the worst of the fear and stigma out of it.
So sorry about your dad! (And super impressed with how you're handling everything!!!)

Amy, I hope this doesn't get lost in the comments with everything going on, but I have to tell you about my son and red dye. I only say this because you are already careful about avoiding dyes, but have you thought about what Noah wears, or touches? My son has behavioral changes with red dye and several preservatives, and it's not just what he ingests- if he touches something where he can absorb the dye, the reaction is the same. It's easy to see with him because he also gets hives. I noticed it the first time when he was gluing red construction paper. It can be paper, markers, crayons, and dye in clothes, rugs, furniture- I'm not imagining this, because it isn't just behavior changes. I know if he didn't get hives he would have been diagnoses ADHD, because when exposed to red dye and BHA, BHT and TBHQ, nitrates, etc. he is a different kid. And because it is red, it's also orange, pink, sometimes purple... Getting an antibiotic or tylenol is a challenge. Before he could swallow pills we had the pharmacy making liquid tylenol for him. Chapstick has BHT. So do lots of gum. And treated lumber! Oh, the park is a nightmare.

I see so many similarities between our kids. Sensory stuff, etc. Email me if I can help at all or you want to know more.

And I'm so sorry about your dad. How sweet that Noah understands how hard this loss is for you.

I remember many, many years ago when there was a big discussion on how to handle I think it was Mr. Hooper's death on Sesame Street. It's been so long I can't remember if that's right. And the kids were fine-it was the adults who didn't know what to do. I guess that's good? My daughter has the same kind of reaction to death. She's the same age as Noah.

This is probably almost offensively easy for me to say, as a not-yet-parent, but man, I would endure every goddamn sensory challenge nature had to throw at me if I could raise a child like Noah, who can appreciate your loss so genuinely and completely.

Bless your heart...I'm so sorry that you lost your daddy. Noah is so sweet and perceptive, and the image of Ezra asking for his Pop-Pop made me tear up.

Our daughter is 4, and just the other day she starting asking about death, because we were talking about a dog who had died. She asked me, "do little kids die?" I flaked and said that usually little kids grow up and become adults and live a long, long time.

I was really freaked out and scared when my autistic son was spending half a morning in a giant Kindergarten classroom last fall. We live in the city and it was kind of a rough school. The first day, he went in and the teacher said, class this is Anthony and they all said 'HI, ANTHONY!' and they were so sweet and great and it went so much better than I thought it would. My son is non verbal and insanely affected by sensory issues and I was so, so worried but it was fine. They are still sweet and kind at five years old, and they treated my son so well. I hope that it goes the same for Noah.

Sometimes kids are the best things we have when things get tough. As much as we adults worry about how they will deal with death, they always seem to surprise us.

I have a cousin who deals with a lot of the same issues as Noah, and when my grandmother died he spent a lot of time at the funeral home trying to tell her to wake up and say hello to her guests. When he realized what DEAD meant, he was sad for about 10 minutes and asked a lot of questions like "is she in heaven?" etc. and then out of the blue said "Hey wait a minute. Are there cookies in heaven?" and I said yes and he said "Grandma's fine then, let's play trucks".

Noah is something else. It's always amazing how in-tune little kids can be, and just when you need it. How precious of him to acknowledge that you lost your daddy. He's working it out in his own way. I'm so sorry for all of you.

@Jill - Amy's been all over the dye thing for quite awhile now: http://www.amalah.com/amalah/2009/11/in-which-a-good-75-of-you-will-glaze-over-by-paragraph-four.html
Good of you to want to help her out, though! Hope the elimination's helped your family.

I went to a grief seminar last night and learned that the root word of bereavement literally means to be "torn apart" and how true that is, I know when I lost my Daddy I felt like someone had ripped a piece of me out. Remember to take time to mourn the man and the relationship you've lost. And know that you're in all of our thoughts.

Oh, God. The sweet, sweet, crazy way that little kids process this stuff -- amazing and sooooo hard, huh? I find it easier to answer those kinds of questions b/c the answers can be short, to the point, and then we can move on.

I keep trying (and failing) to imagine what you could possibly be going through, and I just can't. It's too much. And then I try to remember where you are in this pregnancy so I can imagine you getting far enough through this time to find some peace before everything goes topsy-turvy (in a good way!) again.

Just want to wish you well during this tidal wave of...everything. My greatest sympathies for your dad, hopes for a healthy, smooth pregnancy, lots of positive energy for all the evals and diagnoses. Some day, sooner than you think, the boat will stop rocking so much and life will just feel normal again. Different, but normal.

I wish there was a way to open up the space-time continuum and give you some time all to yourself, to sleep and cry and process and just be, to restore yourself. Grieving is hard enough without parenting and gestating, too. Hang in there.

Oh my. I will be sending soft peace your way. I know too well of the IEP variety (had a lengthy but good! convo with his special ed teacher today). And also, just recently lost my Poppal in Feb. Ivy is 2 and still says she wants to go see him "in the bed" (hospice) and the older kids are all too eager to remind her of the reality of it all...

I lost my Pop-Pop when I was Noah's age. I'm sorry he'll miss out on knowing him better, but he will remember him. I can remember my grandfather's laughter and teasing and love like I last saw him yesterday.

I was so scared when I saw your title in my blogroll, imagining all kinds of horrible things. I let out a breath when I saw it was Noah's results. I just can't imagine anything more happening to your family. And oh, you are so lucky in your boys. :)

Hi, first time commenter, long time reader here...
I just wanted to say I'm sorry for your loss. I lost my Mom after a long illness while I was preggo with my first back in 2004. It was a rough time. Probably a good time to be preggo though, as I might have crawled into a bottle of wine and never resurfaced without that little restriction. So there's that.
Ya know, I wanted to tell you, I think I live in probably the same county as you, and I gotta say, up at this end of the county? Kindergarten is NOT 28+ kids. My daughter's regular, mainstream class has 16 kids. Methinks you should move a little further upcounty. So that Noah can have a small class when he is ready...AND so that we can be BFF's. :-)

My grandmother died when my girls were 4 and 2. It was a week long process, and the 2 year old and I were there when it happened. For weeks afterward the 4 year old would play funeral with my other grandma. She would tell her "you be dead now, because you are the old one and I am the little one." It was really obvious this game helped Mal work it out.

Kids deal with it in their own ways. Sounds like Noah is doing a good job.

As ever, Noah is an awesome and warm dude.
Glad he's getting the support he needs, both at home over this loss, and at school with all the onging stuff. So he's able to get on with being Noah.
Hope you're feeling as well looked after as him, as you certainly deserve it. Hope the love surrounding you gives you the same security it gives both your sons.

what incredible kids you've raised Amy. I also applaud you for being upfront. When my mother died, my brother told his kid that she went to live with the dinosaurs? Hello? She's not extinct. She died. And it's sad. Hang in there - you deserve some ease and happiness and it will come!

I just started following you a few months ago and I don't know your whole back story--but I wanted to tell you that even though your (current) posts are on difficult topics, I like reading them. You are a gifted writer.

Grieving while pregnant (very pregnant) and going through school testing bullshit...and then writing great posts on top of it? Amazing, my friend. AH-MAZING.

I'm all weepy right now. I just read your last entry and got all mushy. So sorry about your dad. My father died when my neice was 8 & my nephew was 6. I liked what my brother said to them...'so long as we remember him he is still with us.'

Those death and dying questions from little people are very hard to deal with!

There is a book that we just found, "The Invisible String" by Patrice Karst, that my 6 and 4 year olds really like. Nothing explicitly about death, but it has helped a lot with being apart from the ones you love. (We are dealing with DH on a deployment to a not-so-nice place in the world.) Anyway, the book makes me feel better too!

I thought of you and your family this morning when I was waiting in line at the grocery store and I dropped an extra toonie in the Canadian Cancer fund box. I've got my fingers crossed that if enough people do the same maybe they can find a cure for this awful disease.

I am so sorry your daddy died. Mine died nearly 2 years ago (suddenly; his last gift to us) and I still cry missing him.
The diagnosis for our now 9 yo keeps morphing too. He's on the spectrum somewhere, but what in the hell are the rest of those acronyms? All I know is, he gets every single service offered at school, from ESL to SpEd, to TAG, to OT, to PT to WTF. I volunteer a lot. I reckon if the district can spend $27k to educate him, I can spend time in that school office, copying and laminating shit and running errands, almost daily. But the BEST thing I do? Fetch Starbucks - on me, delivered hot to teacher's eager little paws. You could do that with 2 in a buggy, or one trotting, one on your chest or back, going in to the school...Not that I want to add to your load, but maybe once in a while, next year???!!

Jill - I have a friend who turns our other friends' problems into Listen to MEEEEs without remembering previous anecdotes and trials and errors and... Between sadness over Amy's post and my general overprotectiveness, I missed where you noted she's addressed dyes already. Apologies.

Amy - apologies also to you for a needless side-convo. Still hoping for a lighter load. And grinning through tears over the awesomeness of your family.

I'm so sorry about your father. I pray for better days ahead for you and your family. I a member for the Fuck Cancer club. I am a young mother of two small children (2 and 5). I am battling a very aggressive form of breast cancer. Death is certain, you may want to communicate that dying is a part of life, rather than telling him or letting him believe you won't die or no one else will die. Laying the groudwork that death is a natural, albeit painful, part of life. I never expected to die this young, and would have been in your shoes telling my children the same thing. But here I am... I feel very differently about it now.